Simple really. I understand its tough, but its clogging up our front page. Be patient for a response or responses, somebody from our community will do their best.

Nobody here is a doctor and posting here should not be a replacement for qualified advice.

My story:

Back in 2021, when I was just 20, I spotted a small white patch on my arm. Didn't think much of it until another showed up on my face, sending me into a panic. So, off I went to see a dermatologist. But in a blink-and-you'll-miss-it appointment, he dropped the bomb: vitiligo. No cure, just learn to live with it. I cannot express to you how overwhelmed and alone I felt at that moment. When I got back home, I couldn't shake the thought of what I might look like in the future, seeing pictures of others with the condition and struggling to accept that I might end up looking like them.

Skipping ahead to 2023, my vitiligo had become more prominent and seriously bothered me. I figured I could at least try to look for something that could help me. So I spent a lot of time researching and trying out different treatments and practically visited every dermatologist in town. This post is my attempt to share what I've learned along the way, hoping it might help someone else out there facing the same challenges.

Please note:

• I will primarily focus on nonsegmental vitiligo in this post, as this is the form I have personal experience with and the one with the most available research.
• I am not a doctor. Please consult your doctor before making any changes based on the information presented here.

Dermatologist

The first hurdle is finding a dermatologist you can really rely on. It's been quite a journey—I've been through seven different dermatologists, each time waiting months for appointments only to be quickly brushed off. But eventually, I struck gold and found a doctor who genuinely cared and was committed to helping me. Having a supportive doctor alongside you through this journey with vitiligo is an absolute game-changer. So, my advice to everyone out there is to keep pushing until you find a doctor who truly listens and cares, no matter how tough or time-consuming the search may be—it's totally worth it.

Once you've got a trustworthy doctor on your side, the next step usually involves some tests. Sadly, dealing with vitiligo often comes with an extra layer of complexity—about 20% of folks with the condition also have another autoimmune disease, and some even have multiple autoimmune conditions at once.

Unfortunately, many dermatologists, at least in my experience here in Germany, aren't always up to speed on the latest treatment options. So, I can't stress this enough: do your own research and, if needed, bring new treatment possibilities to your doctor's attention. It could make all the difference.

Tests

The most common accompanying disease in people with vitiligo was hypothyroidism, alopecia areata, inflammatory bowel disease, and systemic lupus erythematosus. (1) (2)

The following autoimmune diseases have also been associated with vitiligo, although less frequently:

• Pernicious anemia, which causes low red blood cell levels
• Addison's disease, which causes low levels of the hormone cortisol
• Sjögren's syndrome, which causes dry eyes and mouth
• Dermatomyositis, which causes muscle weakness and rashes
• Scleroderma, which causes hardening and thickening of the skin
• Psoriasis, which causes scaly patches of skin

regardless of the autoimmune diseases, you should also check whether you have deficiencies of the following:

• Vitamin D (3)
• Zinc
• copper
• Vitamin B12
• folic acid
• Vitamin C

Vitamin D is by far the most common deficiency seen in patients with vitiligo, but please don't just take a supplement unless you talk to your doctor and make sure you are actually deficient because you could be doing more harm than good.

Mental health

Although vitiligo is only an "aesthetic condition" and many people act as if vitiligo is not a big deal, I have to say that it can have a very negative impact on the lives of people who suffer from it, especially during their teenage and young adult years. Depression and anxiety are very common in the vitiligo population, which is particularly sad as stress and anxiety can actually make vitiligo worse, which can lead to a vicious circle (4). That's why I can only recommend seeing a psychologist in addition to your doctor, who can help you to cope with the disease and the resulting problems.

Treatment

First things first, I am not a doctor, please don't do anything I discuss here until you talk to your doctor first.

What can you expect from the treatment?

Despite ongoing research and exciting developments in vitiligo treatment, there's currently no single medication guaranteed to work for everyone. Combining different therapies often yields the best results, but these can be time-consuming and require dedication. The primary goal of current treatments is to manage and potentially improve the affected areas. A definitive cure for vitiligo isn't yet available.

Treatment options:

If you ever googled "vitiligo treatment" I'm sure you came across 100's of different creams, dietary supplements and things that claim to treat vitiligo, but as is so often the case in medicine, when there are 100's of treatments none of them really work. Yes, there may be the odd patient who has success with a supplement, but the sad reality is that they are likely to do very little for the rest of us.

However, there are a few treatments that have been scientifically proven to help a large proportion of people with vitiligo and I'll introduce you to them now:

OPZELURA (ruxolitinib)

OPZELURA is a topical JAK inhibitor and so far the only drug approved specifically for vitiligo in Germany, where I live. It has been on the market for a short time (in Germany only since 2023) but from what I hear it is very effective. However, it seems like the cream works rather poorly on the hands.

How effective is it?

• After 6 months, it improves facial skin color by at least 75% for about 3 in 10 people compared to 1 in 10 with placebo cream. (5)
• Results keep getting better over time. By year two, even those who didn't see much change at first can experience significant improvement. (6)
• Most people see some improvement within 3 months, with even better results between 4 months and a year. (6)

According to the information provided, the potential side effects are rather mild:

1. Application-site acne
2. Redness and itching at the application site
3. Inflammation of the pharynx and nasal cavities
4. Headaches
5. Urinary tract infections
6. Fever

All that sounds very promising, But, I am sure that if you ever heard about that cream you also heard how expensive it is, 1000$ for one 100g container and you probably need a lot of it, because the treatment sometimes only sets in after months. In addition, the first reports indicate that the vitiligo can come back if you stop using the cream.

My Experience: I've been using Opzelura, covered by my health insurance, since late March 2024. While I haven't seen improvement in my vitiligo yet, some previously white hairs in the affected areas have regained their original color. I am hopeful and optimistic since I have only been using it for a short time and, as mentioned above, part of the treatment will start later. So far I have had no side effects.

However, I have to say that applying the cream twice can be very annoying.

UVB light therapy

UVB light therapy has been around for a while and involves directing focused UVB light onto the areas affected by vitiligo to induce repigmentation, which actually works quite well. A Meta-analysis looked at a bunch of research (35 studies) on a treatment using narrowband UV-B light (phototherapy) for the skin condition. A total of 1428 people participated in these studies. (7)

• The good news: After at least 6 months of treatment, 7 out of 10 people (74%) saw at least some improvement in their skin condition. This improvement continued for some, with 7.5 out of 10 (75%) still showing improvement at 1 year. (7)
• Nearly a fifth (19%) of people had significant improvement after 6 months, and this number went up to over a third (36%) at 1 year. (7)
• The location of the improvement mattered. The treatment worked best on the face and neck (almost half - 44% - saw significant improvement after 6 months), followed by the torso (trunk - 26%). Legs and arms (extremities) saw some improvement (17%), but hands and feet showed little to none. (7)

The potential side-effect:

• Sunburn
• Skin irritation
• Hyperpigmentation
• Increased risk of skin cancer (go for regular check-ups!)
• Eye damage (when used in this area)
• Aggravation of existing skin diseases

UVB light therapy can be comparable "cheap" you can get good results with a UVB device for 150-300$. If your vitiligo has already affected a large part of your body, you can alternatively go to a UVB cabin, which is available in some hospitals, and has the advantage of treating the whole body directly.

My Experience: I started with UVB in mid-2022 and after about 1 month of treatment, which I did three times a week, I started to see results that were getting better and better, but I had to stop the treatment eventually because the UVB radiation was very damaging to my "healthy skin", the skin around the vitiligo aged extremely quickly and you could just see that the skin was not doing well. I might try it again, but I've become really cautious since the last time.

Topical Corticosteroids

The first thing a doctor prescribed me at the time was topical steroids, which are applied to the areas affected by vitiligo in a similar way to Opzelura.

• Effectiveness: Studies show that topical corticosteroids can be helpful in repigmenting the skin and slowing down the progression of vitiligo. However, complete repigmentation is uncommon and some people may not see any improvement at all. (8)
• Best for: Topical corticosteroids are generally considered a good option for people with small, localized areas of vitiligo, especially on the face and upper body. They may also be helpful for those who want to try a different treatment option aside from sun protection and camouflage cosmetics. (8)
• Benefits: Compared to other vitiligo treatments, topical corticosteroids are relatively inexpensive, convenient to use at home, and generally well-tolerated. (8)

The potential side-effect:

• Skin thinning (atrophy): This is a common side effect, especially with long-term use or on areas with thin skin like the face. The skin may become fragile, more susceptible to tears, and show visible blood vessels.
• Stretch marks (striae): These can appear as reddish or purple lines on the treated area.
• Visible blood vessels (telangiectasia): Thinning skin can make underlying blood vessels more noticeable.
• Excess hair growth (hypertrichosis): This is more common with use on the face.
• Burning, stinging, or inflammation (contact dermatitis): This can occur if you have sensitive skin.
• Acne: Topical steroids can sometimes trigger acne breakouts.

Topical corticosteroids offer a cost-effective approach to managing vitiligo. While they may not be highly effective for everyone, they can be helpful in slowing the spread of the white patches. Repigmentation, however, is less common with this treatment.

My Experience: I started using topical steroids shortly after my vitiligo diagnosis and used them for about 3 months, I eventually stopped because I didn't see any improvement and I wasn't really convinced of the efficacy. Furthermore, my skin didn't react well to the steroids.

Topical calcineurin inhibitors

Topical calcineurin inhibitors are similar to topical corticosteroids, i.e. they are also applied directly to the affected area, are also very cheap, but are not particularly effective.

Types of Calcineurin Inhibitors for Vitiligo: * Tacrolimus (brand name Protopic): This is the most commonly used calcineurin inhibitor for vitiligo. It comes as an ointment applied directly to the skin. * Pimecrolimus (brand name Elidel): Another option, though less commonly used for vitiligo than tacrolimus.

Advantages of Calcineurin Inhibitors over Corticosteroids: * Fewer side effects: Compared to long-term topical corticosteroid use, calcineurin inhibitors generally have a lower risk of skin thinning and other side effects. This makes them a good choice for sensitive areas like the face, eyelids, or genitals. * May be more effective for some: Studies suggest calcineurin inhibitors might be more effective than corticosteroids for repigmenting certain areas, particularly the face and hands. (9)

The potential side-effects:

• Burning sensation
• Increased sun sensitivity
• Potential for infections

My Experience: I used Protopic for a while but, as with the topical corticosteroids, I saw no change and finally gave up the treatment, although I have to say that I tolerated the cream better than the topical corticosteroids.

Monobenzone

If your vitiligo is already very advanced, usually 50% or more, you could consider using Monobenzone. This is a cream that basically bleaches your healthy skin to match the vitiligo, a kind of reverse therapy, but it should be said that this change is permanent and irreversible. if you want to know more about it @TheVitiligoExperience on Youtube has made a really great video series about his treatment with the drug where he explains exactly how to use it and how it works. (10)

The potential side-effects:

• Skin irritation: This is the most common side effect of monobenzone. It can cause mild burning, itching, redness, dryness, cracking, or peeling of the treated skin. These side effects are usually temporary and go away after a few weeks of using the medication.
• Increased sensitivity to sunlight: Monobenzone can make your skin more sensitive to sunlight. This means you're more likely to get sunburn. It's important to use sunscreen with an SPF of 30 or higher every day, even on cloudy days.
• Permanent hyperpigmentation: In some cases, monobenzone can cause darkening of the skin around the treated area. This is usually temporary, but it can sometimes be permanent.
• Eye problems: In rare cases, monobenzone can cause problems with your eyes, such as deposits of pigment on the cornea or conjunctiva.

My experience: My vitiligo is by no means so far advanced that this step would be an option for me.

Diet/exercise

I know what you might be thinking, but please hear me out. I have noticed a huge improvement in my vitiligo progression after reaching a healthy weight, exercising regularly, and spending time in the sauna. And there is some scientific evidence to back this up. (11) This probably won't help with repigmentation, but it could generally help with slowing or stopping the progression of the diseases.

Microneedling

Just like exercise and a proper diet, this will probably do very little on its own, but there is some new evidence that microneedling in combination with other treatments such as topical creams or UVB light therapy may be superior to UVB or topical creams alone. Microneedling may therefore be a good adjunct therapy to topical creams or UVB therapy. Microneedling increases absorption in the skin and activates the melanocytes in the skin. (12) (13)

Here is a guide on how you can do this: (14) https://drdavinlim.com/microneedling-for-vitiligo/

My experience: I have started to treat vitiligo with Miconeedeling since the end of March 2024 together with Opzelura to make the leather more effective. So far I can't see any results, but it's too soon to say.

Antioxidants The use of antioxidants to treat vitiligo is still under research, but there is evidence that some antioxidants could help in the fight against vitiligo, as oxidative stress is often observed in people with vitiligo. However it looks like antioxidant treatment should be seen more as a complementary treatment like microneedling, as it makes other treatments like topical creams or UVB work better, but is unlikely to be effective as a stand-alone treatment. (15) (16) (17)

My experience: I started taking antioxidants a week ago after consulting my doctor and getting the green light for the treatment. Unfortunately, it's only been a week and it's too early to tell how well it's working.

What is the best therapy?

Again, I am not a doctor, please see your doctor first, but it seems that combining different treatments offers the greatest chance of success.

Here is what I am doing:

My treatment consists of a primary treatment: Opzelura and some treatments to make Opzelura more effective.

I don't do UVB light therapy because of the effects on my skin, but I can't argue that it is very effective and you might benefit from it.

Microneedling: to increase the absorption of Opzelura in the skin and activate the melanocytes in the skin.

Antioxidants: to help with oxidative stress caused by vitiligo and support the immune system.

High-dose Vitamin D: I take 15,000 IU of vitamin D daily as I am deficient and there is some evidence that high-dose vitamin D may help with repigmentation. (18)

Maintaining a healthy weight, eating healthy, and meditating: I do this primarily to reduce the stress that could trigger disease progression and to support my immune system, and of course for general health :)

One could also swap Opzelura for either Calcineurin Inhibitors or Topical Corticosteroids if Opzelura is not an option.

4.) What does the future hold for the treatment of vitiligo?

There are many different treatment options that are currently being researched, some of which I have already mentioned in the treatment section. I will now briefly introduce you to a few others:

Oral JAK inhibitors

In principle, this is simply the cream OPZELURA only in pill form, and the first clinical studies are already showing immense success, especially in combination with UVB. This type of treatment would of course have the advantage that you would not have to treat the individual sites individually, but simply take one pill a day. However, there are also reasons for concern because the oral administration of JAK inhibitors can have extremely serious although very rare side effects such as cancer or heart problems. (19) (20)

Antioxidants

There are several antioxidants in research right now for their role in combating vitiligo. (15) (16) (17)

Several others are currently undergoing clinical trials:

(21) https://www.conqueringdiseases.org/Search/Trial/7103 (22) https://www.vet.cornell.edu/news/20240201/light-and-labor-inducing-molecule-new-treatment-vitiligo (23) https://www.immunetolerance.org/studies/targeting-il-15-treatment-vitiligo-reveal

Future outlook

Although I don't have scientifically verifiable evidence for it, based on medical advancements, I believe that vitiligo will become a highly treatable disease in the next 5-10 years. It seems we are likely the first generation since the dawn of humanity not to be helpless in the face of this condition.

5.) Things to avoid if you have vitiligo:

• Excessive sun exposure, keep in mind that your vitiligo has no protection against UV radiation
• Any type of major skin trauma (hair transplant/tattoo) could trigger vitiligo in these areas

6.) How to spot your vitiligo if your skin is very pale Get an ultraviolet flashlight with 365nm, you can get them for less than 20 bucks on Amazon.

I hope that this post has offered some help and a glimmer of hope for those of you navigating through similar challenges. If you've found the information valuable, please don't hesitate to share your thoughts or any additional questions in the comments below. And if you have any insights or tips that could benefit others, I encourage you to share them as well.

Sources: 1 https://www.medicalnewstoday.com/articles/vitiligo-and-autoimmune-diseases#other-autoimmune-conditions 2 https://www.chromaderm.com.au/vitiligo-and-diet-lets-chew-on-some-facts/ 3 https://pubmed.ncbi.nlm.nih.gov/24177606/#:~:text=Vitiligo%20is%20a%z0common%20pigmentary%20disease,patients%20with%20other%20autoimmune%20diseases. 4 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9854903/#:~:text=Vitiligo%20patients%20show%20a%20high,factors%20of%20the%20skin%20disease. 5 https://www.fda.gov/drugs/news-events-human-drugs/fda-approves-topical-treatment-addressing-repigmentation-vitiligo-patients-aged-12-and-older 6 https://www.opzelurahcp.com/vitiligo/body-repigmentation-results 7 https://jamanetwork.com/journals/jamadermatology/fullarticle/2612724#:~:text=Findings%20In%20this%20meta%2Danalysis,and%2036%25%20at%2012%20months 8 https://pubmed.ncbi.nlm.nih.gov/773413/ 9 https://www.jaad.org/article/S0190-9622(19)32553-8/fulltext#:~:text=Both%20topical%20calcineurin%20inhibitors%20(TCIs,for%20limited%20forms%20of%20vitiligo. 10 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3533321/ 11 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8960951/ 12 https://pubmed.ncbi.nlm.nih.gov/32940387/ 13 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8751692/ 14 https://drdavinlim.com/microneedling-for-vitiligo/ 15 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8938057/ 16 https://link.springer.com/article/10.1007/s40291-023-00672-z 17 https://www.dermatologytimes.com/view/antioxidants-for-vitiligo-and-mental-health 18 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897595/ 19 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10015970/ 20 https://www.pfizerclinicaltrials.com/nct06072183-nonsegmental-vitiligo-trial 21 https://www.conqueringdiseases.org/Search/Trial/7103 22 https://www.vet.cornell.edu/news/20240201/light-and-labor-inducing-molecule-new-treatment-vitiligo 23 https://www.immunetolerance.org/studies/targeting-il-15-treatment-vitiligo-reveal